New Uses of HIV Data for Public Health: Analyzing Tensions in U.S. Policy and Practice for Patients, Policymakers, and Practitioners

• In Event: A New/Old Technology for Governance? Questioning Big Data Surveillance - I: Big Data State & Private Enterprise

Abstract

The U.S. approach to HIV surveillance is one of the most distinctive elements of the national response. Since the 2000s, person-level HIV surveillance data have informed nearly every aspect of the domestic governance of HIV. “HIV surveillance data” held by health departments and “HIV care data” have historically been very separate classes of data. Practitioners generally work under this premise. However, this is no longer the case, speaking from both technical and regulatory standpoints. HIV care data are now also surveillance data. This is an effect of developments in U.S. health IT, new “HIV Care Continuum” models, and new standards of HIV care. This paper draws on STS and bioethics to propose a program of research to understand transformations in uses of HIV data and their implications.

Two developments have effectuated changes in the nature and use of HIV data. The first follows from CDC guidance requiring all states to collect electronic viral load data from lab tests ordered by clinicians. These data are used by health departments to plan local responses and to target individuals for “re-linkage to care.” The second is “molecular HIV surveillance” (MHS). MHS involves the application of phylogenetic tests to samples. MHS allows for new forms of HIV “cluster-tracing,” “transmission network” mapping, and tracking strains of HIV that are resistant to antiretroviral therapies. These technologies raise bioethical questions related to genomic technologies in public health and new uses of clinical data for surveillance. This paper assesses the landscape and proposes a reform-oriented interdisciplinary research agenda.

Author

• Stephen Molldrem, University of California - Irvine